I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu

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Tuesday, April 7, 2015

Different Views

The mistake that neurodiversity advocates often make is to equate autism research with a modern form of eugenics. Yes, there are people who donate money to autism research thinking that it will help prevent the disorder. But science is unlikely to reach a point where a child’s risk of developing autism can be conclusively predicted before birth. Instead, researchers — at least the ones I’ve spoken with — hope more than anything that the search for autism genes will help reveal the biology of brain development. Gaining this type of understanding is an opportunity to identify where, when and how to intervene to help people with autism improve their lives.

But what neurodiversity advocates have right is the need for a cultural change. If autism weren’t seen as something to be universally cured, future therapies could be focused on better alleviating the conditions that lead autistic people to physically and emotionally suffer, such as meltdowns and sleep problems.

Scientists and neurodiversity advocates need not be pitted against each other. There is a false dichotomy in the autism world that suggests we must choose between studying the origins of the disorder and accepting autism as natural personality variation. This divide creates unnecessary tension between the scientific and autism advocacy communities, whose interests actually often overlap. We can work together to secure more resources for people already living with autism without attacking critical research efforts. To dismiss all autism genetics research out of hand is as shortsighted as treating autism as a single monolithic condition in need of a cure.

First of all the Jigsaw analogy, dear god the jigsaws. Can we please stop with this? Autistic people aren't a puzzle that needs fixing. We aren't some strange group that needs to be understood. Many of us are people like anyone else and all you're doing by perpetuating this jigsaw analogy is ironically making it harder for people to accept us as normal.

Secondly, the attitude. This is something that has driven me mad about the Autistic Society before but this year is the worst. The way the group writes its campaign is unbelievably patronizing, making it sound like all Autistic people are helpless victims that need your help. This is again, not at all helpful and again, perpetuates the notion that we are all like Rain Man, incapable of human interaction and are unsociable.